Discussion in 'General ME/CFS Discussion' started by Radio, Feb 11, 2014.
I think I read that he left and is now at Pro Health forums @Sporty. Not 100% sure though.
Yeah I heard that too but after a quick look on there I couldn't see any sign of him. His posts on here look very informative and helpful don't they.....
Thanks @consuegra for an interesting article.
" 19th century medicine" or "desperation medicine" , well expressed
A couple of thoughts spring to mind here:
I was discussing lipids with Myhill this morning - she takes the view that they also displace toxic fats, permitting their removal from the body.
Some symptoms of 'P5P excess' are actually induced R5P deficiency, taking equal doses of the two can balance things out. B12 can also induce R5P deficiency. Either way exceeding 100mg / day is considered potentially harmful.
Increasing mito function first then methylating rather than vice-versa reduces the chance of instability & side effects since Methylation depends on mito function. This adds to the case for you describe.
This thread is so exciting to me! I hope NT factor is what I need to keep from waking in the middle of the night to guzzle 3 quarts of coconut water, 3 K pills, and three K sports drinks and five bananas plus several potatoes and nicotinic acid just to keep my heart beating after these methylation supplements do their magic. I am soooo excited to have found this thread!!
But wasn't this part of SMP? Only it was to be taken with methylation not before? I had overlooked it's significance. I was actually searching the B12 intrinsic factor when I saw this.
I wonder why it is not part of Fred's protocol- perhaps it could help the people frustrated that can not tolerate it.
Btw, whatever happened to Radio???
Hmmm, looks like NT factor can cause insomnia for a lot of people in other threads. Not sure why.
Freddd mentions lecithin in his protocol which is the same thing. NT factor, Phosphatidylcholine, lecithin are all along the same lines. It's best to take it before and/or during a methylation protocol.
Radio kind of got run out of here after touting that he had effectively "recovered" from CFS and sharing his theories of what causes the illness. I've learned that people on this board don't want to hear that someone with ME/CFS has recovered because then they assume they must not have had ME. So he got cut down for having supposed alternative motives. A shame, really. Radio definitely didn't have ME but he wasn't selling anything and was sharing helpful info.
I too wondered what had happened to Radio....sad when people contribute such interesting stuff.
Where can I get the Smart Youthful Energy in the uk?
Radio was great. Sometimes obnoxious and untactful? Maybe. But he was exceedingly helpful when he wanted to be.
I benefitted from his advice, although didn't "recover". To be fair my energy is better than it's ever been but I'm still suffering extreme chemical sensitivity, which he claimed to overcome.
I like NT factor a lot but the problem with CFS is that if you have underlying infections then you can't just throw NT factor at the body, it won't be utilized because the demand isn't there. It would be a waste of money to take a dose of four pills per day when your body can only utilize one. Further, if the infections are present then the rate of regeneration won't be fast enough to build enough mitochondria to notice any energy improvement.
Coming late to this thread.
Has anyone else experienced significant recovery following Radio's approach?
I am 100% over CFS after following radio's protocols, methylation support, and using dr. chia's equilibrant. I know not everyone is so lucky and every situation is different though. I still have many health and (especially) digestive problems. I have my energy back though, and am sleeping much better.
I don't take that many supplements anymore, less than 8 daily I'd say, and they are all general stuff, like vitamin E, vitamin C, multivitamin, methyl b12 and folate, etc
(I should say I am still on equilibrant, and feel much better as I continue to take it.)
Wow, that's truly great to hear, and I'm delighted for you.
Do you mind if I ask you a couple of quick questions, tdog? I'm seeing Dr de Meirleir in Belgium next month, where I'm hoping to get some serious testing done to find out just where my broken down system is at. I'm currently researching approaches/protocols so that, after the test results come back, I can make an informed decision about what's likely to work best for me. After 14 years sick, I don't want to waste time on any dead ends or unsuitable approaches.
- how long were you ill before starting on Radio's protocols?
- are you now able to function through a full day? (I have to stop, rest and sleep in the afternoon)
- are you able to work, paid or otherwise?
I luckily had experienced some health problems earlier in my life, and knew that my health was ultimately in my hands so I started researching immediately after the fatigue set in as my doctor was doing tests simultaneously. I started doing radio's protocols after a year 1/2 of chronic fatigue, and within a year or so I was better, most things he suggested helped to some extent, but it was honestly the equilibrant that put me over the edge. I still get some symptoms that come back if I go off the equiilbrant(you're supposed to take it for 2 years continuously) so I obviously have some sort of virus or immune system problem since it helps so much.
I can function through a day without any trouble, I no longer need naps. I do not get post extertional fatigue, although it still takes me longer to recover from any weight lifting I do than it used to. I still have some very major trouble with my digestive system, so I am only able to eat ~1000-1200 calories a day(mainly liquid diet) which makes it hard to have enough energy to do anything strenuous, as long as I don't need to do anything that requires a ton of continuous strength or endurance I'm fine. I used to get post exterional fatigue BAD, it would hit me immediately after running up a flight of stairs, or lifting something heavy, and last 2-3 days.
I went back to part time work for 4 months( 3 full days a week) and I have quit that job and am furthering my education, the worst part was the mental fatigue as well, which has mostly cleared up too.
Don't give up because recovery is totally possible, I know I didn't have it nearly as long as you but it was still so severe and debilitating for 2 years until things started looking up. You can make it through this.
Thank you so much, tdog. That really is encouraging. I definitely haven't given up, but stories and comments like yours are a huge help.
That's such an arresting remark "I luckily had experienced some health problems earlier in my life" !
I suppose I had the opposite experience of yours. I had always been blessed with effortless good health, and I also had an unshakeable faith in doctors. When I got ill, I spent a number of years either assuming I would just get better or assuming someone would make me better. In my defence, for many years I was too exhausted to read for more than a few minutes, which made research very difficult. Needless to say, I got zero active help from any doctor I was signed up with.
I had a major improvement, by a near-tragic accident, in 2011 when my partner had a year of cancer treatment (recovered now, thank heavens). It was a terrible year, but I devoted every scrap of energy I had to researching what would help. We switched to what I now realise was a reasonable approximation of a low histamine diet, although I was following anti-cancer rather than low histamine guides. I'm looking at the low histamine stuff now and seeing more things I can maybe do to maximise that aspect of our nutrition. If it caused a major improvement in itself for me, as it did (especially when I kicked gluten), I'm starting to think the Radio protocol might be a really productive avenue for me. I'll hold fire until I've had the testing, but I'm going to keep researching on this one. Generally, it seems like our presentation of the illness was/is pretty similar.
So glad to hear you can actually get through a full day and that your mental fatigue has cleared. Those are probably the two holy grails for me. It sounds like you have to take some extra care of yourself, but that's no bad thing — remembering to stop and smell the roses, and all that. I'm sure anyone with ME would accept that as a condition of being able to function more or less normally.
I'll have to do some more reading on Equilibrant. I hadn't heard of that before. A quick search suggests it can be obtained here in the UK with a bit of effort.
Looks like this might be an interesting year for me, anyway, tg. Thank you again for your help. It's hugely appreciated.
I'll keep posting somewhere on PR as and when I adopt any protocol. I'm finding this site quite life-changing and I'm definitely going to try to return the favour by writing up my own experiences, for good or bad.
My source for Lecithin:
Distributed by 'Lekithos' in Florida, the company sells a 100% organic, non-GMO, vegan, liquid, soy-free product that is rich in phosphatidyl choline. It is a product of Italy and packaged in the US: www.mysunflowerlecithin.com.
I buy mine as a 16oz (473 ml) bottle
I just re-read Radio's mitochondrial support layout and comparing it to what my doctor has taught me and has me on, he's dead on. Of course this alone won't be enough for most people but is an important first step. This is very accurate and knowledgeable info. Why did people push him out of here again?
These are great, thanks for posting. I recently discovered Seeking Health's sunflower PC as well. Per my own studies and the referral of my doctor, it seems most of Dr Lynch's products are of good quality
You can also try a Google Site Search
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